A blog by Hannah Lewis, University of Loughborough & Maria Jose Rodriguez Pinzon, Cardiff University
Professionals often use niche terminology in their work, which can create a gap between them and the interested public. This is particularly common in research.
To bridge this gap, along came the Transparency Project!
The Transparency Project had three aims, one of which was focused on the accessibility of information about the longitudinal studies taking place in the United Kingdom, shared on the Catalogue of Mental Health Measures. The Catalogue shares information about longitudinal studies, where the same participants share data at multiple time points, based across the United Kingdom. While useful for researchers, the Catalogue’s technical language could potentially hinder public accessibility. To ensure that this is not the case, our team of researchers co-produced accessible summaries of the studies on the Catalogue with Lived Experience Experts (LEEs) representing the public.
As undergraduate psychology students on this project, we learnt about the power of co-production. In this blog, we reflect on the benefits that this coproduction had on the information we share on the Catalogue, as well as on our personal and academic experiences.
The project:
We started by choosing six longitudinal studies that feature on the Catalogue. Our team collaborated and wrote a lay summary for each. We shared these summaries with LEEs from the Lived Experience Advisory Group (LEAG) at DATAMIND. This collaboration was an iterative process, which involved multiple rounds of feedback and a workshop. The workshop was a productive discussion following initial feedback about the summaries, received from the LEE group. In this, we discussed how to ensure accessibility, while staying true to the study.
It was interesting to realize that some scientific terms have become commonplace in our everyday vocabulary, even as students in the early stages of our research careers. This challenged us to create summaries that were accessible yet true to the studies. Following discussions with the LEE group, we decided to retain technical terms in the summaries instead of replacing them, and provide definitions using an icon linked to the DATAMIND glossary. As one of the LEEs mentioned, this would not only improve the accessibility to the information, but also increase the data literacy of the public.
Maria Jose’s reflections:
I truly enjoyed the experience and learnt many new skills that enriched my undergraduate education during this project. For example, I learned to manage verbal feedback during the workshop. During my degree, I write and submit assignments, then receive written feedback. Usually, I wait weeks before receiving written feedback. This can result in feeling detached from it. Conversely, oral feedback, delivered in real-time, feels more immediate and personal. Therefore, I found that to manage the feedback, it was important to remember that everyone had the goal of improving the summaries overall.
This experience highlighted the importance of bridging the gap between researchers and the public. In our field, the aim of research is often to help the public. As such, the importance of accessibility within research cannot be understated. Including the public throughout the research process can help more people to fully benefit from any findings. Throughout my own career in research, I hope I will have the opportunity to include the public and participants of my studies, in aspects of decision-making and communication. For example, during my final-year dissertation project, I will dedicate a section of my project to feedback from the participants.
Hannah’s reflections:
This project has been interesting and educational in multiple ways. At the beginning of this project, I was under the impression that lay summaries should avoid technical language. However, throughout the process of working with LEEs, it became clear that it was much less about avoiding jargon but rather ensuring that the information has clarity. This project reminded me that research is done for the public, so why should the work not be accessible to those without research experience?
The main learnings that I have taken from this project are about the ways in which research can be made accessible, particularly through the involvement of LEEs and the role that we, as undergraduate students and early-career researchers, can have in supporting this. Whilst carrying out this project, I learnt that I was well-placed along my academic journey to help strike a balance between the technical representation of studies and research, while ensuring transparency and accessibility. I felt familiar with the terminology used in research but also acknowledged that it was specialised and can be exclusive. This is a skill and understanding that I plan to take forward, for example when presenting and sharing information about my dissertation project during the final year of my degree.
Final thoughts:
Our team thoroughly enjoyed collaborating with the LEEs! When discussing the studies, some of the LEE group realised that they were participants in studies, and were very excited to be supporting the sharing of the study information. This highlighted the positive impact of collaboration. Also, others were so inspired by the summaries that they went on to learn about the studies on the Catalogue.
While different lessons were learned, both us and the LEEs agree that collaboration in research can be achieved in many ways. Increasing collaboration and accessibility of data information can increase engagement, involvement, and participation within research. So, this should be a higher priority to researchers.
Check out the and an overview of the Transparency Project on the DATAMIND website.
